Title

Mapping The Journey: Family Carers' Perceptions of Issues Related To End-Stage Care Of Individuals With Muscular Dystrophy Or Motor Neurone Disease

Document Type

Journal Article

Faculty

Computing, Health and Science

School

School of Nursing, Midwifery and Postgrad Medicine, WA Centre for Cancer and Palliative Care

RAS ID

2238

Comments

This article was originally published as: Dawson, S., & Kristjanson, L. J. (2003). Mapping the journey: family carers' perceptions of issues related to end-stage care of individuals with muscular dystrophy or motor neurone disease. Journal of palliative care, 19(1), 36-42. Original article available here

Abstract

Progress in medical technology and treatment has resulted in more people with neurodegenerative conditions surviving for longer periods of time. This increased lifespan means that these individuals have a longer period of dependency on others, with a heightened need to maintain quality of life for both the individual and the family. Our paper reports on the findings of a study involving in-depth interviews with 16 carers to determine their perceived needs during the final stage of caring for someone with muscular dystrophy (MD) or motor neurone disease. Results suggest that the palliative care model has much to offer individuals with degenerative neuromuscular conditions and their families, but it is not yet recognized as an important part of care for young people with MD. Three major themes emerged in the analysis: reactions and responses, health system crossing points, reaching forward.